A teenager diagnosed with a rare genetic eye disease, losing his vision is desperate to see the world before she becomes blind.
Tilly Hayward, 17, suffers from Starguard disease. This is a genetic genetic condition that affects one in 10k people.
Stargardt's disease occurs when fatty substances accumulate in the macula. This is a small part of the retina required for central vision.
Most people in this condition retain their surrounding vision, so they do not lose their vision completely.
However, last November, Tilly, a native of Peterborough, Cambus, was given devastating news that her peripheral vision is deteriorating, causing her to become blind.
The student said she doesn't know the time before she loses her vision and she has launched a fundraiser to help her see the world.
Her wish list includes Disney World in Florida and beaches in Dubai.
Tilly, who studies psychology at home, said:
“From the age of four or five, I've been obsessed with the beaches and airplanes. I've always wanted to be an air hostess.
“This news has led to the perspective of life being short.”
Tilly was born with Starguard disease, as both her mother and dad carry the wrong genes.
There is one in four possible cases in which a child develops a condition.
Tilly said people have noticed problems with her vision since she was four years old, but she recommended glasses.
She explained:
“I remember sitting in a math class. I asked my TA to plot coordinates on the graph.
“I didn't know that the piece of paper in front of me was on top of it.”
Tilly's mother, Nicola, took her to her optic nerve history, but the family was told it was a “behavioral problem.”
They were eventually referred to Peterborough Hospital by another spectacle family urgently, and then seen at Moore Fields Eye Hospital in London.
“I went through some really hindering and intimate testing to help doctors understand what was going on.
“I was diagnosed with Starguard's disease when I was nine years old. I don't have a central vision and my peripheral vision is like a spider web.
“I have some visions, but that's not clear or normal.”
Stargardt's disease usually affects central vision only, but a scan taken in November 2024 revealed that it also spreads around Tilly.
Tilly has learned to read Braille and is studying online for her A-level, and she says she is accepted, she will lose her eyesight.
She said: I was very embarrassed.
“Now I've grown up and connected with other people in similar states. I've realized that you can still achieve amazing things.
“My mother was incredible and she has always been my biggest champion.
“We went to Spain last year and it was amazing. I felt very happy there, but it was just as hard as that.
“I remember when I was younger, I went a lot on my days off, and I could see more.
“I make the most of what I can do, and if I can't see people or waves on the beach, I listen.
“I had a really frightening depression, and I had a five-year battle with anorexia, not knowing how to deal with my loss of vision.
“It became a way to numb my emotions, but through the sharing of their stories, I realized that I didn't have to control or hide my feelings.”
Tilly has launched GoFundMe to help her travel around the world, raising her £1,490, a target of £2,000.
She added as follows. “My biggest dream is to go to Florida because I was a little girl.
“I'm a huge Disney fan and I always imagined walking into the park and looking at the castle in the distance.
“I've accepted that it's not like that anymore, but listening to music is incredible.”
“I would also like to go to Dubai, and I think it's a very cool place with one beach and one city.
“If you are diagnosed or experiencing loss of vision, it may feel like the end of the world, and there may be no future or hope.
“It takes time, but I grew up to realize that disability shouldn't disable you.
“You can learn to live with it and adapt. If I hadn't experienced a loss of vision, I wouldn't be who I am now.”
